Life as a Registered Mom

 


Saturday May 5, 2018


Janine Patterson shares the uncommon experience, benefit and burden of being part of the medical profession when your child is diagnosed with cancer.

My son, Creighton, was diagnosed with retinoblastoma, childhood eye cancer.

What is a Registered Mom?

First off, let me start by introducing myself.  My name is Janine Patterson, and I am a Registered Mom.  What is that you may ask?  Well, it’s a combination of part Mom/part Registered Nurse all rolled into one.  Which, if you ask my kids, is both a blessing and a curse.

It’s a blessing when they come home from school, needing help with their health or science homework (or when they need a volunteer for career day).  It’s a curse because I know when someone is really, truly sick.  Pulling a sick day from school is hard to do on my watch.  Sorry Ferris Bueller, licking your palms to make them feel clammy, while bent over faking a stomach cramp doesn’t get by me.  Unless it’s a raging case of schistosomiasis, you’re going to school!

Awareness in a Soap Opera Magazine

In November 2005, I became a parent of a child with retinoblastoma.  I remember learning about retinoblastoma years before my kids were born.  It wasn’t from a nursing class or seminar I had attended.  It was from a soap opera magazine.  Yes, that’s right, from a soap magazine.  Two actors, two different families, affected by the same disease.

In the article, Matthew Ashford and Hunter Tylo mentioned looking for the red eye reflex when pictures of your kids are taken with a flash.  I remember telling my husband we needed to look for those little red dots in their eyes.  If they were there, that told me my kids were safe from retinoblastoma.  Maybe that article was a sign from above.  Somehow I was meant to read it and remember it in years to come.

A baby has one red pupil and one white pupul - the classic early sign of eye cancer in children.

Red reflex seen in flash photos is the camera capturing healthy retina. When red-eye reduction is turned OFF, naturally absent red reflex (either a black or white pupil) could indicate retinoblastoma or another serious eye condition.  Learn more about red and white reflex in children’s photos.

The Curse of Knowledge for a Registered Mom

Sometimes it truly is a curse, not a blessing, to be in the medical profession when a family member is sick.  You don’t want to know what could happen down the road.  You don’t want to understand what’s going on…but you do.  You know the risks involved, what the words metastasis, enucleation, chemotherapy protocols and radiation mean.  You know the complications that can arise.  You know where to look for information, who to talk to and what to say.

This might sound silly, but when my son was diagnosed with Retinoblastoma, all I wanted to do was be his Mom.  There were days when I wanted to tell the doctors and nurses to speak to me as they would to any other Mom who wasn’t in the medical field.  There were times I didn’t tell anybody I was a nurse.

There are times I forget my son had cancer.  Life pulls me in many different directions and keeps me very busy.  But when the time comes for another yearly check-up, a yearly eye exam, it’s like a slap in the face and reality sets in again.  My son had cancer.  It will be a part of him for the rest of his life, and for the rest of my life.  It will be something I will always worry about.

Simple little complaints, like a headache or body ache, make me react in fear.  Is the cancer back?  It may be nothing, but the fear is always there.   As a Registered Mom, you’re always waiting for that other shoe to drop.  It may never happen, but that thought is always in the back of your mind.

This photo was taken after one of Creighton’s check-ups at CHLA.  He loved going to the Santa Monica Pier and the beach, and I would take him there before we flew back home.

Creighton Strong

My son is named after the university I attended because that was the last name we were on when we pulled into the hospital parking lot while I was in labor (the poor kid’s name changed at every stop light along the way)!  It sounded like a strong name and for all he has been through, it has fit him to a tee.  Crey received his retinoblastoma treatment at CHLA, and the doctors and staff there will forever hold a special place in my heart, because of all of the wonderful care they gave him.

Through it all, Creighton has done remarkably well.  He is an active, stinky 13 year old boy who loves college basketball, irritating his sisters, memes and playing Fortnight/Xbox.  Nothing slows him down.  His goal in life is to give me as much grey hair as possible.

His dream is to play for the NBA someday.  If that doesn’t pan out, he’s hoping to become a famous You-tuber, or maybe a stockbroker (at least that’s the plan as of this week…who knows what next week will bring!).

In a few weeks, he will be graduating from 8th grade and heading to high school in the Fall.  Maybe he’ll change his mind while there and decide to study medicine.  Maybe he’ll be the one to discover a cure for cancer.

Childhood Cancer Changes Us

I’ll never know how or why my son got Retinoblastoma.  What I do know is that it’s helped me become a strong person, both personally and professionally.  It’s helped me to realize to get through life, you have to take things one day, one moment at a time.  You have to roll with what you get and what you have, or else it will be the end of you.  It’s helped me to be more compassionate and empathetic towards people, both as a nurse and a Mom.  As my kids get older, I see them exhibiting these traits to others also.

Being a Registered Mom is not an easy job.  The hours may be long and the patients may be tired and cranky (or more in my case, very hormonal).   But one thing is for sure, I wouldn’t trade this job in for anything.

The Patterson Kids

Creighton and his Superstar Sisters – Ellery (blue shirt), Amelia (dark blue hoodie), Madelaine (Yellow Iowa shirt).

About the Author

Janine Patterson RN is a pre-procedure Nurse at Northwestern Medicine. She studied nursing at Creighton University, from where she received her BSN in 1992. She has been a nurse for 26 years and a mother for 18. Janine lives in the suburbs of Chicago with her husband, Brian, and 4 children (Madelaine, Ellery, Creighton and Amelia, aged 10-18).

Janine Patterson
1 reply
  1. Caroline says:

    My son called John he is a retinablastoma surviver. I am in Kenya but truly in our country kids are dying every day, mothers are not aware of this disease.

    Reply

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